Caroline Reilly (Photo courtesy of Caroline Reilly)
“Where do you think you’re going?” My mom is smiling. She’s chiding me, but she’s doing so happily. We’re not going anyplace special—just stepping out to run some errands—but I have on my favorite red lipstick, my new jeans, and the Gucci loafers I bought on consignment. Last year I wouldn’t have worn any of this: Years of endometriosis and pelvic floor dysfunction had caused so much damage to my nerves and muscles that it hurt to put on almost any item of clothing. Jeans were like sandpaper against my skin; the seams on my underwear felt like they were made from razor blades. Anything with wires, hooks, or lace felt like armor on my chest. Every day, I’d put on the same yoga pants, the ones without so much as a tie at the waist because even that felt lacerating. Sometimes I’d just wear a cotton dress—with no bra or underwear—topped with a sweater because it was the most I could tolerate.
If I had to leave the house and wanted to wear real pants or a pretty blouse, I’d have to take a tramadol or oxycodone just to indulge the simple whim. I’ve always been a clothes horse. Anytime I’ve made any money—whether as a camp counselor in high school or working full time after college—I always put some funds aside to shop for bags, lingerie, makeup, dresses, and shoes. I reveled in being the “fashionable one” in school, even when it meant being an outlier among my classmates in the preppy New England town where I grew up. Fashion defined me, offering the freedom to feel pretty and confident, and to forge an identity through my aesthetic.
But four years ago, I was diagnosed with endometriosis, a chronic reproductive-health condition that can cause acute pain, fatigue, organ dysfunction, and infertility. Since my diagnosis, I’ve lost a lot—time, ability, sanity. But I didn’t expect to lose the part of me that found joy in getting dressed each day. I never thought I’d have drawers of clothes that went unworn because they were too painful to drape over my skin. When you are diagnosed with a chronic illness, everything in your life becomes incidental. You are no longer an amalgamation of your experiences and passions, but a vessel for a pain that renders everything else moot. You fight it at first: You push through at school and at work; you take care to tell friends that you’re rescheduling, not cancelling, the plans you made. You try on new clothes that come in the mail and think, “I’ll have an occasion to wear these eventually.”
Everything is on hold as you wait for your body to return to its role as your caretaker—not your decision maker or captor. Before I got sick, I’d stand at the vanity in my bathroom every day and put on a full face of makeup. But after my diagnosis, my body grew tired so quickly I’d be woozy with pain by the time I got around to putting blush on the apples of my cheeks. But instead of forgoing the process altogether, I sat in front of a smaller, portable mirror every day. It still made me tired, and the sitting made me ache, but I needed to do it. Even amid the pain, there were things I clung to, like applying the same Chanel skincare I’ve been using since middle school and loading my ears up with new piercings and a perfectly curated selection of gold studs.
These small efforts didn’t claw at my back or cause suffocating discomfort the way a pair of jeans or a tight shirt did. When I was recovering from surgery, my sister did my makeup—even on the days when I was housebound I needed to be able to look in the mirror and see something other than the unavoidable reality and pain. “When you look good, you feel good” is a trite expression, but I found it to be profoundly true, especially when I was in pain. Putting on makeup, painting my nails, and taking selfies just because I liked the way I looked became necessary tools of survival. Chronic illness imposes a specific kind of trauma on the lives of those it affects; a body that should be a “safe haven” instead becomes a danger. And experts note that the acute vulnerability of chronic illness, coupled with ongoing suffering, puts patients at risk for PTSD.
People who live with chronic illness or chronic pain can lose a sense of what we deserve in life, and, in accordance, often recalibrate our brains to expect less, to survive on less, to want for less. This can be a form of prophylactic self-defense: Facing each day with a firm understanding of what we can and cannot accomplish is a way to avoid setting ourselves up for disappointment. But this diminished sense of desire also impacts life’s pleasures: You’re home on the couch, so why should you wear “good” jewelry or take those new shoes out of the box?
People who live with chronic illness or chronic pain can lose a sense of what we deserve in life, and, in accordance, often recalibrate our brains to expect less, to survive on less, to want for less.
Putting stock in your appearance can be a treacherous endeavor for women in particular, with gendered stereotypes about vanity, frivolity, and narcissism plaguing the decision to invest in looking good when so many other, more serious things are going wrong. But it’s for precisely this reason that taking care of one’s appearance becomes a radical act of self-love for chronically ill people. It refutes the trope that they must be martyrs to their pain and beholden only to the essential caretaking of their illness. Doing my makeup every day, even on the worst of days, taught me the value of taking care of the outside of me; losing control of when and if I would be able to wear my favorite dress taught me not to wait for the perfect occasion and to exist for the day in front of me.
I have been immensely lucky to experience some relief over the years. Three surgeries, countless hours of physical therapy, and an IUD since my diagnosis, I’m starting to see glints of my old life again. I’m no longer calculating my energy reserves, doing mental gymnastics to assess which commitments I should prioritize or wondering if socializing tonight will mean missing school or work tomorrow. Most days, I can wear whatever I want, and I’ve learned to appreciate these small affirmations of my agency—running to CVS to pick up lotion and some new nail polish or going for a walk in the city. I try to treat myself every day, and when I don’t leave the house, as a reason to celebrate, to just fucking live. I break out the good jewelry. I don’t wait for the perfect occasion to wear that new pair of shoes, because being able to get through the day is a perfect occasion.
I know what it’s like to have a body that makes my sartorial decisions for me, and now that those decisions are my own again I don’t ever want to forsake them. Getting dressed every day in clothes you like and feel good in is such a simple pleasure; it becomes easy to take that small freedom for granted, and makes its loss so insidious. But that’s also why I clung so tightly to the few remnants of these rituals I could salvage. They provided a sense of normalcy and control when the rest of my life was filled with anything but. And now they remind me of how far I’ve come, of the little things that can become big things when we lose them and when we get them back, and the power in liking what you see looking back at you in the mirror.
